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How to Help Kidney Patients Live Long and Live Well: Lessons from Life Options Dori Schatell, M.S. Executive Director, Medical Education Institute Director, Life Options Rehabilitation Program Slide 2 Medical Education Institute u Non-profit organization (501c3) u Mission: Help people with chronic disease learn to manage and improve their health u Examples of our recent work: Life Options Rehabilitation Program Kidney School Home Dialysis Central Core Curriculum for the Dialysis Technician Slide 3 What Well Cover u What patients need u How we know u What you can do u How Life Options can help Slide 4 MEI: Research-based Approach Publish research results Conduct and review qualitative and quantitative health behavior research Translate and integrate findings into research- based education materials Slide 5 Paradigm: Acute vs. Chronic Disease Duration Goal Patient job Staff job Acute Disease Short Cure Comply Provide Care Chronic Disease Long Adapt Manage Sx Self-manage Provide care Prepare pts to self-manage Slide 6 Paradigm: Acute vs. Chronic Disease Duration Goal Patient job Staff job Acute Disease Short Cure Comply Provide Care Chronic Disease Long Adapt Manage Sx Self-manage Provide care Prepare pts to self-manage Slide 7 Life Options Rehabilitation Program Dedicated to helping people live long and live well with kidney disease Slide 8 Life Options Model Care Delivered by Providers + Input Follow- through by Patients = Input - Health - Longevity - Quality of Life - Vascular Access Outcomes Slide 9 What Patients Need: Preparation to Self-manage What Patients Need: Preparation to Self-manage A week in the life of a dialysis patient In-center HD PD or Home Hemo Slide 10 How We Know Professional Research Patient Research Employment study Exemplary Practices (4) Pt. Opinion studies (3) Pt. Longevity Nephrologist study Nurse study Texas USAT ESRD Self-mgmt ESRD sx-mgmt Social worker study Internet Study Slide 11 How We Know: Patient Opinion Studies u90 phone interviews in 3 sets uKey findings: Fatigue, dialysis time compromise QOL Patients want information Patients are willing to self-advocate Slide 12 How We Know: Patient Opinion Studies u Questions patients have: How long will I live? How well will I live? u Messages that resonate: Hope: Life can still be good Learn: Ask questions/get answers Adhere: Follow the treatment plan Slide 13 How We Know: Patient Longevity Study u Key finding: Affirmations: Self preservation: I want to live. Self identity: I am still me. Self worth: I am still valuable. Self efficacy: I am in control. u Key finding: Active, comprehensive self- management Curtin RB, Mapes D, Petillo M, Oberley E. Long-term Dialysis Survivors: A Transformational Experience. Qual Health Res 12(5): 609-624. Slide 14 How We Know Professional Research Patient Research Employment study Exemplary Practices (4) Pt. Opinion studies (3) Pt. Longevity Nephrologist study Nurse study Texas USAT ESRD Self-mgmt ESRD sx-mgmt Social worker study Internet Study Slide 15 How We Know: ESRD Self-management Study N=372 patients from 17 facilities Collected the following data: uDemographics uSelf-management activities uKidney disease knowledge uFunctioning & well-being (SF-36) Slide 16 Functioning & Well-being: PCS + MCS Scores Physical Component Summary: PCS Mental Component Summary: MCS Slide 17 MCS & PCS Predict Morbidity & Mortality MCS of 1 Point: u Mortality 2% u Odds of hosp. 1% PCS of 1 Point: Mortality 2% u Odds of hosp. 2% Lowrie EG et al. Medical Outcomes Study Short Form-e6: A Consistent and Powerful Predictor of Morbidity and Mortality in Dialysis Patients. AJKD 41(6), 2003:1286. Slide 18 How We Know: ESRD Self-management Study Key findings: u More kidney knowledge, higher FWB u More self-management, higher FWB Slide 19 Self-management Areas uSuggestions to providers uInformation seeking uSelf-care during dialysis (PCS) uShared responsibility in care (PCS) uSelective symptom mgmt (PCS & MCS) u[Adversarial] Self-advocacy (MCS) uImpression management (PCS & MCS) Curtin RB et al. Nephrol Nurs J 31(4), 2004:378-387 Slide 20 Corroborating Findings u N=2,418 patients from DMMS Wave 2 u Data were adjusted for case mix u Patients whose care was patient-led had: Significantly lower unadjusted death rates (p